The other night when Jay and I were taking turns trying to coax Andrew to sleep (which is only slightly more difficult than extracting blood from a stone, passing a camel through the eye of a needle, or avoiding the eight million pounds of Valentine’s Day candy in our house), Andrew started complaining that his leg hurt. This is the third time he’s mentioned his leg, and he was insistent that it was painful. He clutched at his little calf and whimpered. Jay and I tried giving the ache magic kisses; we rubbed the sore spot; and I even put on one of Mommy’s magic, invisible Band-Aids, which, as everyone knows, are laced with super special healing powers. Nothing worked.

Eventually, Andrew dropped into sleep out of sheer exhaustion – the only way he ever falls asleep. I, however, lay awake long into the night, worrying about Andrew’s leg. Since he’d complained about it before, and since I couldn’t see any bruising or injury, I did what I do best – imagined the worst. “Oh. My. God,” I said to Jay, who I had to poke back into consciousness around two A.M. “I think he has bone cancer.” My husband has many wonderful qualities, not the least of which is his ability to make me realize that most of the horror stories I conjure in my head in the wee hours of the night are just that – stories an anxious mind creates, not anything akin to reality.

Still, during the time between when my imagination convinced me that my three-year-old son had a terminal illness and when my husband convinced me that I was being insane, I genuinely suffered. The thought of anything hurting Andrew – especially something so awful as disease – made my stomach writhe and my pulse accelerate. By the time I nudged Jay, I was panting and covered in a cold sweat.

As I waited for my blood pressure to return to normal, I had an epiphany. Even the thought of harm to my son was excruciating. Imagine how my parents feel, knowing that their child is sick with a chronic, and potentially fatal, illness which requires her to take medications with a host of frightening side effects. I am sure that my parents did just as Jay and I do when I was a baby and a toddler and a child: they pushed any thoughts of illness or tragedy or trauma visiting me or any of their children into the dark and hidden folds of their minds, where they thought they could smother these fears into never occurring. “That can’t happen,” they probably whispered to themselves, just as I do, when I can’t prevent myself from thinking about Andrew getting sick or dying or suffering in any way. “That won’t happen. I won’t let that happen.”

Illness can make you into a narcissist. Illness requires that you focus on your symptoms, on the state of your health. Since so much of the practice of medicine is subjective (“How do you feel today?”; “Does this new treatment make you feel better?”), you must pay some attention to your body and its workings. But it can become difficult to close that inward eye that attends to your own needs. Once this eye has taken stock of your health, it tends to turn its unblinking gaze outside and start assessing the whole world by its own solipsistic terms. Without intending to, you’ll find yourself making everyone and everything just another player in the great drama of your illness. And that’s a shitty thing to do.

I know how difficult it is for me to have sarcoidosis. I’m usually pretty good at recognizing the toll this disease takes on my husband and my son. After all, I can see the visible evidence on their faces – Jay’s grey mask of fatigue or Andrew’s paralyzing fear at his mother in a wheelchair. I also try my best to be aware of the countless ways our family and friends help us deal with my illness. But sometimes I lose sight of just how much my health worries those who care about us. Especially my parents.

Throughout this blog, I’ve tried to pay tribute to the generosity of our friends and family. We’ve receive financial help, a car, hot dinners, gourmet meals in a box from a far-away friend, and prayers. People send me books they think will inspire me; other folks go along to doctors’ appointments with me or trips to the emergency room when Jay is unavailable. No one, though, has done more for us than my Mom and Dad. I’m afraid to even list all that they have done, because I’m pretty sure I’ll have forgotten something. What they have done – ranging from spending weeks at our house helping out with Andrew when I’m sick, to scrubbing our bathrooms, to accompanying us to Denver, New York and Philadelphia to see specialists, to making these medical trips fun and not scary for Andrew, to bringing me flowers after surgery, to holding my head while I vomit from new medication, to buying me clothes and a warm coat in my new, post-prednisone size so that I don’t feel loathsome and fat, to framing pictures and hanging them on the walls of our new house so that it feels like home, to taking in our beloved dog, to packing and unpacking boxes in three different moves, to cheering me up when I need to be cheered up, to letting me cry when I need to cry, to telling off a doctor who isn’t treating me right, to researching my disease, to bullying me into taking better care of myself – is keep us sane.

They have walked with us every step of the way. And that certainly has made things immeasurably easier for us. But I have no doubt that being so much a part of the illness of their child has terrified, saddened, and angered them. We can’t take this away from them. All we can do is thank them and learn from them. If there comes a day when Andrew needs more than an invisible bandage, we’ll know what to do.

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2 Comments

barbsaid,

Rebecca.. speaking as a parent that’s had to apply more than the “invisible bandage”, the giving that I have done for my child has been funded almost entirely by the unfathomable deep well of Love..like an automatic search from my heart that says “how can I help?” and it is SO helpful to answer that with action, even when I KNOW I am powerless to relieve my child’s suffering. I can still be a Parent, what a gift, what an amazing gift. I’m fairly sure your Parents would feel similar to this because I’m betting you are an amazing gift to them whether you know it or not. Blessings and prayers, to you, your family and for this post, especially your Parents. Barb

Carol Schaakesaid,

BECKY, Yes, your parents ARE amazing and you, Ken, Larry, and Chrissy are fortunate to have them…not only now when you need them to help you cope, but since you were babes. You’ve shared experiences, adventures, fun, support, encouragement, subtle education and love given freely by two special talented parents. CAROL